Why I Blame Crohn’s for Hair Loss and Shedding

Social media has provided many benefits to the chronic illness community. But for every pro, there’s a con.

My con is a memory reminder function on a social media platform that I use. It shows you posts from the same day of years gone by. Last week, a set of those memories hit me right in the feels.

I felt stupid for feeling sad over something as trivial as my hair not being the way it was 2 years or even 3 years ago.

Hair changes and shedding with Crohn's disease

These pictures are some of my favorite because I was visiting with my little cousins after the family relocated out of state. Also, I absolutely loved my hair color and how long my hair had grown since the last major shed a few years prior.

When I look in the mirror now, I don’t see that hair length, thickness, or even curl from the photos.

Currently, I have long curly hair. It’s just very different in how it was a few years back through no active change on my part. In a world full of things I have not been able to control, my hair was one of the things I thought I could.

I don’t remember this change happening overnight. This was a gradual change. However, if I were to sit and look at pictures I could pinpoint the changes in a really obsessive, and probably unhealthy, manner.

A few days after the memories reminder popped up with pictures of my old hair, I experienced an extreme shed. At the time, I was prepping my hair for a coloring appointment.

I’m used to a few handfuls of hair coming out, but this was different. For as long as I can remember having Crohn’s symptoms, I’ve experienced hair shedding. But this, this was intense.

Worries about hair loss as a side effect of IBD and medications

During these shed phases, I worry about discovering a bald spot. I have friends whose inflammatory bowel disease has significantly altered their hair thickness or has left them almost bald.

With that said, hair shedding is a natural process that can ebb and flow. But that doesn’t stop my irrational fears from manifesting.

I started biologic treatment for Crohn’s disease in 2013. As the years have progressed and meds have changed, my hair is noticeably different with each medication I’ve tried.

Procedures with anesthesia due to Crohn’s have also created major hair loss for me and produced grays. Not cool.

It was exactly 3 months prior that I went under anesthesia for a colonoscopy and endoscopy, and sure enough bye-bye hair. I had a feeling this was coming.

Scalp pain after being under anesthesia

I have been experiencing on-and-off deep scalp pain. This is a different pain from scalp psoriasis.

I liken the burning to sunburn on your scalp; a deep searing feeling that radiates heat to the touch. But not only does my scalp hurt, but even my hair also hurts.

There’s a phenomenon called telogen effluvium where hair falls out due to a trauma to your body, but it’ll grow back. Whenever I’ve had these major sheds like this, I try to remind myself why it’s happening to quell the rising panic within.

Can I get my hair colored after hair loss from Crohn's?

I checked with a friend who has Crohn’s and is a hairstylist. She said this is a normal shed and it should be okay to get my color done.

When I got there, I told my stylist what happened. She’s used to my shedding more than her other clients and always checks my scalp for issues before applying color.

Once the color processed, she set out to wash the dye out and condition. I could feel my stylist pulling more shed hair off, each time she rinsed.

When it was time to go back to her chair to brush the knots out, I noticed something was off. I felt a giant mass of knotting at the ends. But this didn’t feel like typical knots.

Clutched between my fingers, I focused my gaze on the knotted mess resting along the ends of my hair. It wasn’t a knot per se.

This was a lot of hair (root to tip) that was no longer attached to my scalp. It became caught up in the ends during the wash and condition cycle.

“What the H***!” Flew out of my mouth.

As I loosened and removed the knotted up mess from the ends, my blood ran cold and I wanted to vomit.

You see tropes in movies and on TV where someone burns their hair off with something and is screaming dramatically while clutching what was once attached to their skull. That was me minus the screaming because I didn’t want to terrify my stylist.

Seeing my panic, my hairstylist sat me in the chair and looked over my scalp and hair again. All was good, and most likely this was just part of the hair shed. My friend the stylist later said the same.

Should treatment for Crohn's stop because of hair loss?

I know I’m not alone in experiencing a significant hair loss due to their Crohn’s. And I know, from experience, that there are many who are experiencing the same if not worse, right now.

I also know for a fact that some will blame their Crohn’s or ulcerative colitis treatment and want to abandon the treatment because of vanity.

I’m writing this in hopes that if you too are experiencing the same that you will know that you are not alone. It will grow back.

I’ve seen far too many people comment on social media that their hair is falling out or they’ve gained weight since starting treatment and want to quit. Please do not stop your treatment because of hair loss or weight gain.

While I do realize that my hair has vastly changed since starting this new treatment, I am the healthiest Crohn’s-wise that I’ve been in 3 decades. That’s huge!

It’s because of Crohn’s that I’m on certain treatments. It's because of Crohn's that I do not absorb nutrition properly. So, I try not to view the problem as coming only from my meds. It took a while to arrive here, but now I blame Crohn’s for stealing my hair.